Apollo Update {June 2014}

These days it literally takes this two-sleep-pillow-set-up to keep Apollo’s airway open and him breathing while we drive.

Apollo saw his ENT earlier this last Tuesday. After emailing a video of Apollo’s severe obstructive sleep apnea to his pulmonologist, Dr. R, he talked to his ENT Dr. P and had a sleep study ordered. This sleep study showed over 50 instances of obstructive sleep apnea, on a night when he wasn’t even snoring. His last two sleep studies showed 0-5 instances.

Dr. P said that Apollo’s tonsils were at a 3+ on a scale that goes from 0-4+. He also said last time he saw him, they were at a 2+. In some twisted bit of irony the only part of Apollo that seems to be growing and thriving are his tonsils.

*sigh*

We love Dr. P for a variety of reasons (he is also Kalina’s ENT) not he least of which is his genuine concern and care for Apollo. At this visit he said he “remembered us well” and told us how good Apollo looks to him. “Especially considering what you guys went through to get to this point“. Dr. P came into our lives when Apollo was readmitted to the hospital just six weeks after having his heart “repaired”. After spending months and years trying to get doctors to pay attention to Apollo’s serious issues this means a lot to us. Dr. P has seen Apollo when he was in pretty rough shape. He is the ENT who did his last bronchoscopy, therefore he knows exactly what Apollo’sairway looks like. Continuity in care is so important!

Because of his “difficult airway” and “unique” anatomy it’s a bigger deal for him than your average four-year old. He has to stay in the hospital overnight to make sure he has no breathing issues after the surgery.

4. Depending on the results of the endoscopy/bronchoscopy he may have his floppy larynx (laryngomalacia) trimmed. I assume it is something like this: supragrlottoplasty, though the Dr. didn’t use that exact term. Apollo already has a narrow trachea (airway) due to his vascular ring, so the goal is to provide as large of an airway as possible. This is why CPAP is not an option for him at this point- that would just be forcing air into a too-small opening. This procedure has some risk…mainly that Apollo will have “difficulty swallowing” for perhaps weeks afterward…and possibly need to be intubated overnight as he recovers. If this were to happen, his actual time spent in the hospital is unknown. Since Apollo is tube fed, we can live with a temporary swallowing issues. The idea of intubation is scarier, but Dr. P took one look at the videos of Apollo snoring and experiencing sleep apnea and described it as “severe” and “scary”. He said he believes at this point that his obstructive sleep apnea left without correction could be detrimental to his growth and development. We won’t know if this is happening until Dr. P has him asleep and can do some tests. At that point he will come out and talk to us so we can make a decision about whether or not to proceed with this part of the surgery.

Tucker is suffering from severe anxiety since he has heard that Apollo needs more surgery (we haven’t told Apollo yet and won’t until it gets much closer). Tucker is having trouble sleeping at night and tell us he “feels weird”. He has spent a couple in our bed and I have been giving him Bach’s Rescue Remedy for anxiety. I think he is having a kid-version of panic attacks. If I try to leave the house he sobs and feels sick.

This is a kid who has seen his parents leave for another state with one-way tickets to seek heart surgery for his brother. This is the kid who, upon meeting his first grade teacher, looked her right in the eye and said, “I’m only here because my baby brother has a heart defect“. I have written a bit in the past a bout the toll a sick child takes on the entire family. This is just one small example. If you’re the praying type, I’d appreciate it if you sent some Tucker’s way.

{Edited to add: Apollo has reached a new milestone in chronic sickness. He has suddenly realized that he misses out on things while he is a doctor/hospital visits. He cried and cried when he found out his siblings were going to his friend Owen’s house while he made yet another trip to Seattle Children’s Hosptial. Then the very next day, his siblings played at Grandma’s house while he saw our local doctor. More tears. This is so hard to watch as a mom.}

Tuckers having a rough time dealing with a lot of loss this year, I’m guessing. His big sister married and moved far, far away. To a child that is loss. He has two other siblings temporarily gone with Teen Missions. Although only temporary, they aren’t there right NOW. Mordecai has even left him right now for Boy Scout camp. And now his fragile little brother is facing yet another risky surgery. Poor thing….yes, a chronically ill baby brother is scary to watch, and maybe it’s coming through TUCKERS sleep because everyone is so worried about APOLLOS sleeping and not getting enough air. I just said a prayer for both boys.

Thank you! I hadn’t even thought about all of the sibling loss he has experienced in the last two months. Thankfully, Judah and Tilly will be back long before the surgery. Hopefully that will help him.

Before I even got to the comments, I was thinking what Beckie posted. Lots of lots of changes in your family this year – and although great and amazing changes – still can cause a lot of stress. I’ll be praying for you guys!!!!!

Prayers your way for all of you, especially Tucker. Because of the trauma caused to my other kiddos by the medical issues of my now two year old we have had to deal with some trauma behaviours. Just us going interstate for appointments can be difficult for them. The last time she had surgery (grommets and a small cleft palate repair, very low risk) we had to have a number of informal and formal chats about thoughts and feelings. I found out less than a week before the surgery that one of my sons was afraid a doctor or nurse would accidentally bump a machine and this would kill Kaylee. This was her fourth surgery and I think eighth GA in less than two years, two of the previous surgeries being open heart, so it never occurred to me that this would be something he would worry about. This led to a big talk about what would be done and what machines would be used and the type of training the doctors and nurses had to do to get that job. A lot of it though, was (is) just riding it out and praying like mad that the scar tissue (physical and emotional) doesn’t cause too many problems. So many of the staff (doctors, therapists and nurses) I have spoken to over the years turned out to have medically complex or otherwise “special needs” siblings and their sibling inspired them to their profession. I hope God can use my kids’ scar tissue so beautifully..

Oh my this post broke my heart in more than one way. First, poor sweet empathetic Tucker. When you write it all down I can see exactly why he is so worked up. Poor guy. And Apollo realizing that he is missing out because he is sick…that makes me so sad. I also have a chronic illness that holds me back from being able to lots of things and I hate missing out too. I hope that at some point in Apollo’s life he isn’t so restricted.

Having extra tissue removed from my sons larynx when he was 5 months old did miracles for his eating and breathing, Dr told us he was eating and breathing theu a hole the size of pencil lead. Prayers to all.

Praying! We are actually at mayo clinic now for obstructive sleep apnea in our 5 month old. He just had his tonsils removed and adenoids shaved. His sleeping reminds me so much of Apollos. He had the surgery 2 weeks ago and was hospitalized 5 days – doing much better now – was very rough just after surgery. We will be praying!!!

I am so sorry that Apollo has to endure yet another scary, painful procedure. And I am so sorry that the other children in your family are so scared about their little brother, but that is completely natural as I am sure you know. I still remember having my tonsils taken out as a child and it was so terribly painful eating/drinking after. Perhaps tube-feeding will be a blessing for Apollo after the surgery because it is the swallowing on the surgical site that causes the pain. I fervently hope this is the case with him.
Fortunately for Apollo the medical community can do so many amazing procedures in our 21st century. And they get better all the time. Of course you and your husband/family are probably all suffering as much as little Apollo with each crisis (maybe not physically, but certainly emotionally. It is such a hard thing having a seriously ill little one. Apollo’s illness seems to be so rare and unlikely that I wager he is the subject of many articles in professional medical journals from the many doctors he has seen and the many procedures he has endured. My best wishes for all of you that this goes as smoothly and as pain free as possible.

My heart breaks at the thought of more invasive surgery for your sweet boy. I know that nothing is “simple” or “routine” when you’re dealing with a complicated case, and I am praying that if anything else is lurking beneath the surface, it would come to light during this procedure and somehow spare Apollo more pokes and prodes and missed play dates. And Tucker … oh, my heart. We have a similar, but different, anxiety here with a sibling who has decided that if plastic is bad for Birdie, it is bad for EVERYONE. He literally shrieks if he sees a child mouthing a plastic truck or sucking on a plastic straw. It’s very classy, I assure you. :-/

Oh Renee! I was literally crying by the end of your post. You can bet that we will be praying for Apollo and Tucker and ALL of you as you enter this new stage of trials.- Hopefully they will lead to some positive steps forward for Apollo-but until that time PLEASE and I mean this- PLEASE let us know if there is something you think we could to help make things easier for your kiddos. And that includes sending legos via Amazon 😉 ( I’ve got free shipping…hehe!) Much love!

We deal with severe anxiety in our house, our daughter has had this for 6 years. It is a tough battle, we tell her all kids have something. Maybe tell Tucker that he is feeling anxious and scared, just like sometimes other kids get sick. We have Nan say prayers, and ask God to help her keep her mind in the present, and not worry about the future. She leaves her problems in God’s hands over and over. She also freaks out if I leave the house too late, I can go out with a friend as long as I am home at bedtime. If I am going to be home later, my husb and son just stay awake with her and play games and she gets a late start. I hope that it passes for Tucker, bachs remedies are great. there are other herbs for sleeping and anxiety, they help a lot. Prayer is our # 1 go to, will add Tucker’s new anxiety to my prayer list.